Thursday, March 21, 2013

World Down Syndrome Day - 21 DreamS...stories that will open your eyes to life!



World Down Syndrome Day is a special day.  World Down Syndrome Day is a day to celebrate...to celebrate the beautiful lives of those with Down syndrome...to celebrate the families and individuals who love, support and advocate for people with Down syndrome...and to celebrate the advancements that have been made in our world for enriching and enhancing the lives of people with Down syndrome.  

It's also a day to reflect on and become passionate about continuing to promote education and understanding of what Down syndrome is. World Down Syndrome Day is a day that provides an opportunity to share with the world the message of awareness, acceptance, and inclusion for people who were born with an extra, extraordinary chromosome. It is a day to inspire others to do the same. 
 
Sycamore Sisters has recently embarked on a special project that allows us to spread this message and to inspire others.  The mission of the  21 DreamS project encompasses what was stated above...Awareness.  Acceptance.  Inclusion.  Inspiration.

21 DreamS started as a fairly simple concept...it has evolved into more than we could have dreamed or imagined!  We are so excited about the possibilities of 21 DreamS.  We have had an overwhelming response to this project, so much so that we hope and intend to continue the 21 DreamS project for years to come. 

Little Lauryn is at the center of 21 DreamS.  She is the inspiration for it.  She has opened our eyes to life...Here is her story.

~ Lauryn

The moment I saw Lauryn, I KNEW.  Immediately.  Even when the doctors didn’t say anything about it as they were cleaning her up and “closing” me up.  Even during that hour or so after her birth before my wonderful doctor came to us to gently and compassionately tell us the news.  I knew my baby girl had an extra chromosome…an extra 21st chromosome to be exact.  This little girl…MY baby girl…had Down syndrome.

I didn’t express what I felt to be true to anyone (except God), not even my husband, John.  There was a chance I was wrong, but my heart and soul were telling me differently.  Because no one had said specifically, “Your daughter has Down syndrome”, I couldn’t be 100% certain, but I knew something was coming, and I knew it was going to be a tough swallow.  I prayed for the strength and courage to be able to accept and handle all that I sensed was going to be before us.  I wanted to be strong…to be able to say, “This is okay – we will get through this…this is no big deal...” and fully mean it.  But not a "big deal” was pretty much the opposite of how I felt.

It is hard to explain all of the emotions that come into play when the reality of having a child with Down syndrome starts to sink in – strong, real and RAW emotions.  For a time, we lived on the roller coaster of emotions such as anxiety, fear, sadness, anger and guilt.   Even so, there was ALWAYS one emotion that was constant…consistent…ever-present.  That was LOVE. 

We loved this child with everything in our being.  As we saw how everyone around her – her doctors and nurses…our family...our friends – connected with her and were instantly drawn to her, our anxieties, fears and sadness started to diminish to where eventually those feelings were pushed onto the back burners.  Yes, they sometimes creep up to the surface in a way to try to distract us from the positive outlook we try to maintain about the wonderful life Lauryn is going to have.  Always, though, the overpowering love we feel for this little girl overcomes them.

Lauryn has helped our family redefine love.  She has helped us gain perspective and appreciation for enjoying and celebrating the little things.  Down syndrome is now a part of our lives, but it does not define us.  It’s integrated into who we are – a piece to our family puzzle…maybe even the missing piece we always needed. 

That “no big deal” feeling I tried to convince myself to have after Lauryn’s birth wasn’t meant to be felt.  Lauryn  IS a “big deal”…not because she has Down syndrome…but because she is Lauryn…she is God’s Plan…and she is extraordinary.

Jen
(Lauryn's Mom)  


To purchase Volume 1 of 21 Dreams...stories that will open your eyes to life..., click on the shopping cart under the preview.  Be sure to help us spread the news about 21 DreamS by sharing this link and sharing on Facebook, Twitter, etc.


 *  10-15% of the total cost of each book (a large portion of the proceeds) goes to Down Syndrome Indiana


21 Dreams...stories that will open your eyes to life...Volume 2 will be released for purchase on October 1st, 2013 to kick off Down Syndrome Awareness month. 
 

Wednesday, March 6, 2013

Spread the word to end the word...

This post was taken from a previous one from 2012...:)

Today is an important day.  It’s a day where every single one of us - young and not-so-young - can work together to make a change.  A real change...one that will make a positive impact...one that will make our world a better place.  

It’s really pretty simple.  All you have to do is spread the word...to your family...to your friends...to your neighbors...to your co-workers...to people you meet on the street.


What word, you ask?  A word that begins with “R”.  The R-WORD. 

RETARD
(and the word "retarded")



The R-word (retarded) originated as a medical term to describe a specific clinical meaning/connotation.  The pejorative (I just learned this fancy word - it means having negative connotations; especially : tending to disparage or belittle) form of the word, however, has taken over in our society...so much so that the words “mental retardation” and "mentally retarded" have been removed from federal health, education and labor policy and replaced with people first language such as “individual with an intellectual disability” and “intellectual disability” (as a result of Rosa’s Law).

Some may wonder why using the word is such a big deal.  It’s typically only intended as a joke.  Heck, much of the time, the person is using it to describe him/herself!  

But, it’s not a joke.  It’s negative.  It’s derogatory.  It’s insulting.  It’s offensive. 


It’s hurtful.  

Think about it.  When someone says, “Don’t be such a retard!” or “That was retarded.”, what is the person REALLY saying?  (“Don’t be such an idiot!”...“Don’t be so stupid!”...“That was dumb.”...”That was worthless.”)

Typically, if someone were in the presence of another person(s) whom he/she knew to have an intellectual disability (or in the presence of that person’s parents, grandparents or siblings)...let's say, in the presence of this person...

...this said person probably wouldn’t think of using the R-word in front of her (or her family), would he or she?  


If people are cognoscente of using the word in certain situations, it's not a word that should be used.  

So, why use it at all?  

That said, the R-word has also become somewhat of a popular slang word...it often just slips off the tongue.  I'm sure I've said it a time or two in my lifetime (even though this word was/is a big "No-No" in my house).  I've heard people I love dearly use this word - both before and since I've become even more sensitive to the hurtfulness of the word. 


Do people mean to be hurtful or negative or derogatory or offensive to others (or to me) by using the R-word?  Of course not.  But, the fact is, using the word RETARD or RETARDED IS hurtful. 


Starting today (if you haven’t already!), make a pledge to stop using the R-word.  Make a commitment to helping others - young and not-so-young - to become more aware of the hurtfulness of the word and to stop using it.  

One person at a time...telling another person at a time...adds up to a bunch of people.  

It adds up to change.  

Be the change...SPREAD THE WORD to END THE WORD.  


 
Do it for yourself.  Do it for your family.  Do it for your children.  Do it for our world.  

Do it for this beautiful little girl...who, while she may have Down syndrome (associated with an intellectual and developmental disability), is the furthest thing from anything having to do with the R-word!

She'll LOVE you for it!